Brain health – time matters

The new ‘Brain health – time matters’ report was launched in September 2024 and is available to access. The report explores the latest advancements and needs in MS, NMOSD, and MOGAD. It highlights the policy changes needed to help people with these diseases live their best possible lives.

MSIF and its member organisations  are proud to have been involved with this important report. People affected by MS from Greece, New Zealand, the Netherlands, Austria and South Africa, helped to review best practice in MS care and shape the recommendations. It was also supported by our member the MS Society, UK. Anne Helme, Head of Research and Access at MSIF, spoke at the launch event to highlight the importance of global collaboration, and how countries can learn from others’ successes.

Since the publication of the first report in 2015, care and treatment in neuroimmune conditions has hugely advanced. The new ‘Brain health – time matters’ report covers MS, NMOSD, and MOGAD as related, life-long diseases. There are no cures and, particularly when undiagnosed, misdiagnosed or not treated early and effectively, they can severely affect many aspects of people’s lives. Owing to this, expanding the scope of the report to include rare neuroimmune conditions may enable wide-reaching impact and improvements.

With the ‘Brain health – time matters’ report, we aim to advance global care and support for individuals with MS, NMOSD, and MOGAD and their families. It has been developed in collaboration with over 45 experts, contributing within subject matter working groups, with support from F.Hoffman-La Roche Ltd, Multiple Sclerosis Society and Horizon, now part of Amgen.

Key themes of the report include:

In addition to the benefits of early treatment with a DMT for people with MS (a), the consensus now is that high-efficacy DMTs should be used early (b). Image adapted from the original Brain health: time matters in multiple sclerosis report with the permission of Oxford PharmaGenesis, © 2015.

Challenges and needs in these diseases, such as delays in diagnosis and treatment, along with highlighting the importance of flipping the pyramid in MS to reduce disability worsening.

• Timely diagnosis and treatment initiation leads to improved health outcomes. Furthermore, if high-efficacy treatments are utilized first, disability worsening may be slowed to a greater extent than if initiated with a comparably lower-efficacy treatment.

Timely diagnosis and treatment is important in relapse prevention in NMOSD and MOGAD.

• Recovery from relapses in rare neuroimmune conditions is often incomplete, leading to permanent damage and disability. Preventing relapses through treatment hinges upon timely diagnosis and the avoidance of misdiagnosis.

Avoiding relapses ensures better long-term outcomes for people with NMOSD and MOGAD.

Socioeconomic burden increases for people living with these diseases, their families and society.

• The report shows how, when disease activity is not addressed early, increasing disability – such as difficulty walking and vision problems – risks imposing a heavy burden on people and their families. It may lead to substantial economic losses for society, due to diminished tax revenue and increasing care costs.

Comprehensive monitoring of these diseases, including emerging measures such as in digital health, cognition and hidden symptoms, could improve personalized care.

• We discuss how using diverse monitoring strategies will enable personalized treatment decisions to be made for every patient. A standardization of outcomes measured will also enable a greater real-world evidence base for evaluation of therapeutic strategies.

Person-centred care for every person living with a neuroimmune condition, including MS, NMOSD, MOGAD and related conditions, would enable holistic management.

• In the recommendations, we ask that people should be proactively included in shared decision-making and empowered to manage their condition through holistic care, along with support and access to peer-organizations.

Policy recommendations to improve equitable access to worldwide care are listed in the report.

The full report and summary are now available on our website. We encourage you to explore the findings and recommendations. Let’s move beyond ‘if only’ and seize opportunities for meaningful change!

The report is published by the Oxford Health Policy Forum. The report has been supported by a grant from F. Hoffman-La Roche Ltd, which has had no control over the educational content of this activity. Grant funding has also been provided by the Multiple Sclerosis Society, which has contributed to the report as an author. Horizon, now part of Amgen, provided sponsorship for the development of this report and has had no control over the educational content.

The launch of this report has been sponsored by Merck Healthcare KGaA and Alexion Pharma GmbH; they have had no influence on the content of the launch event nor the report.